BRCA Update

[ZenaJ]

Hi all, I phoned my cancer nurse this afternoon and she said as long as it doesn't affect the trial I can have the test. She's checking it out and will get back to me. She told me it has only been offered during the last 6 months and that is why nothing has been said before. I'll let you know when I know something new. xx

[Suzanne333]

Hi Zena.

I hope you can have the test soon. I had it whilst on a trial.

Let us know how you get on.

Hugs xxxxx

[ZenaJ in reply to Suzanne333]

Thanks Suzanne, I will. Haven't heard a thing yet. No scan results and no news on BRCA test. I don't know how long to leave it until I call them. I'm sure the scan is okay or I'd have heard something by now. I always want everything done yesterday so I find waiting a pain. I'm sure they've got nothing better to do than sort my tests out (sarcasm but you know that)

Hope you're keeping well. xxx

[85live4ever]

Hi Zena, I notice you have mentioned being on a trial. Which trial are you on? I have been asking my onc about trails for over 2 years but keep being fobbed off. They say things like you are not there yet & there isn't any suitable. I am pleased for you & maybe thats why you are having a nice long remission. Take care Cindyxx

[ZenaJ in reply to 85live4ever]

The trial is a simple one Cindy. I do nothing but fill in surveys. The only difference to my treatment was that I had the chemo weekly rather than three weekly for eighteen weeks. They wanted to see if there were less side effects as far as I can remember. It's followed for five years.

I was pretty lucky on my chemo. I had no sickness. I was very weak and my skin was dry but the only lasting symptom is peripheral neuropathy which many of us get. Otherwise, there are the odd few things like eye floaters, huge tummy but they may not be connected.

Best wishes, Zena xx

[85live4ever in reply to ZenaJ]

Hi Zena, I see, I thought they put you on a trial. I have notice more & more ladies are having chemo over a longer length of time.

As for side effects I have a very long list of them like you we have to just get on with it. Thanks for replying to my question. Take care Cindyxx

[ZenaJ in reply to 85live4ever]

No problem Cindy. I would have tried a new treatment if they'd wanted me to but trials can be a very long and expensive process so if the person about to do the trial might not survive they might think it's not worth spending the money. I'm not saying you weren't expected to survive, I'm talking generally. They have really high criteria for trials like, for instance, you have to have the right blood pressure, you have to have certain pre existing conditions or on a particular medication. Each company had their own conditions that I had to fill to be accepted. You have to eat certain things. When you're already fighting an illness it's probably a completely different thing. xxx